What's your experience with Actemra for GCA?

Be very careful taking Actemra. I felt it was a wonder drug. It put me in PMR remission. I took it from June 2022-May 2023. I traveled to Alaska in June this year. Apparently it suppressed my immune system to the point where I could not fight off Influenza A, even being vaccinated for it. Upon arriving home I experienced the worst health crisis I have ever had. I developed both viral and bacterial pneumonia, went septic and my heart went out of rhythm. I spent 8 days in the hospital with time in intensive care and possibly death as a result. I recovered somewhat but had pleural effusion that was attempted to be drained via two different procedures. Both failed and I ended up hospitalized for 18 days, when it was supposed to be 3-4. I contracted hospital pneumonia for which they pumped me full of antibiotics, causing drug induced hepatitis. I ended up discharging myself and am now seeking care at Mayo Clinic. I feel like my life has been forever changed. I am anemic, dizzy, and out of breath with the simplest activity. So….be careful taking Actemra and be prepared to basically isolate yourself if you do. Luckily my PMR has not returned since going off Actemra in May. Best wishes.

Your story makes me want to stop Actemra. I'm aware that serious infections are possible. Were you off prednisone at the time all of this happened? Are you currently on any treatment for any autoimmune conditions?

I used to have problems with infections when I combined prednisone with almost any other DMARD. I ended up on antibiotics and had a "pain crisis." My rheumatologist would discontinue the DMARD and increase my prednisone dose. She said the infections were caused by my immune system being suppressed too much.

I was able to get off prednisone relatively quickly after Actemra was tried. I have been on Actema alone for most of the last 4 years. My rheumatologist is reluctant to stop Actemra even though I said I would be willing to try stopping it because PMR seems to be in remission.

The only two times Actemra was stopped was when I had a flare of uveitis. My ophthalmologist wanted me on a TNF inhibitor and I couldn't take both Humira and Actemra. Humira may have helped the uveitis but my PMR symptoms returned.

The other time I was off Actemra was when it was being used to treat seriously ill Covid patients. There was a shortage of Actemra so my treatment was interrupted for 6 months. Humira was restarted to prevent uveitis but my PMR symptoms returned that time too.

When supplies of Actemra improved I was ready to restart it because of some serious lower back pain. A neurosurgeon was consulted and said I needed a lumbar fusion because of severe spinal stenosis made more severe because a large synovial cyst had formed.

I thought the pain was because I was off Actemra so I wasn't very excited about a lumbar fusion. I told the neurosurgeon I wanted to wait a year before doing the surgery. After a year, I told the neurosurgeon my symptoms improved after restarting Actemra. Another MRI was done and the synovial cyst was gone. The neurosurgeon and I mutually agreed that the lumbar fusion could wait.

Thank you lmoross for your response. It is a tough decision on these drugs, almost like "pick your poison" and one I wish I did not have to make.

My case could be totally different. If it is working for you please don’t discontinue based on my story. We all know the risks with any immunosuppressive drug. I am just an unlucky person. I stopped the very small dose of prednisone I was taking shortly after beginning Actemra in 2022.
On the positive side my PMR does not seemed to have flared as of yet. Maybe after five years it is ready to be done terrorizing my body. I hope Mayo Clinic can give me back some of my life. Best wishes to you for better health.

It was good. But my numbers down drastically quickly. I had to go on 20 mg after an extensive bowel surgery that caused by the Actemra. I am not ready to reduce, and my rheumatologist says I can do it quickly because I am on the shots. I was part of the original trials and when they reduced quickly I got really sick but that was in 2017. Waiting for numbers again and if they are good, I will try taking it down 5 mg and see what happens.

What study were you a part of? About 7 years ago, my rheumatologist wanted to enroll me in a study but didn't tell me which study. She wasn't sure if I would qualify since I was diagnosed with multiple autoimmune conditions. I had been on prednisone about 10 years by then for PMR alone. I must have been excluded from the study but I'm pretty sure it was an Actemra study.

A few years later, when Actemra was offered to me, I wasn't part of any study. However, it seemed like an experiment to me.

My rheumatologist mentioned an ongoing study with Actemra and asked me if I wanted to try it. My rheumatologist said the study results were looking promising but an authorization request was needed to get it approved for me. I had no idea what Actemra was at the time but I felt like I committed myself to try it.

I asked another rheumatologist what the chances were that Actemra would be approved for me. He said there was "zero chance" because the ongoing study was for GCA patients and my diagnosis was chronic PMR.

The authorization request was approved. The recommendation was to treat my case of chronic PMR using the same guidelines established for GCA patients.

I don't think the guidelines were well established. At first, my rheumatologist was talking about a monthly infusion then switched and talked about a weekly injection. Then, almost as an afterthought, my rheumatologist decided on an injection every 2 weeks to "play it safe."

I was screened for any contraindications to Actemra. I didn't have any history of diverticulitis or anything else that would prevent me from getting Actemra. I started out with an injection every two weeks but later was switched to a weekly injections.

I just started doing a monthly infusion after 4 years of injections. I don't know if that is progress or not. I haven't needed any prednisone for more than 2 years.

I'm sorry you had a bad experience.

Our individual experiences are always so different. One size never fits all.

I don't want anyone to try Actemra based on my experience alone. I try not to hype Actemra up too much.

Same thing with prednisone even though I was more than ready to try something new after 12 years. If prednisone works and doesn't cause too many side effects-- so be it!

My husband developed PMR in May 2023 and GCA (giant cell arteritis) in February 2024. Three weeks ago he started weekly Actemra injections. He’s on daily prednisone 70 mg per day and trying to taper. He was on 80 since development GCA and went to 70 last week. His inflammation levels are finally normal again. He also had to have three days of 1200 mg IV infusions on methylprednisolone in late February.

Has anyone experienced being tired after an Actemra injection? That seems to be his only side-effect. It’s kind of early to know what the Actemra is doing for him but the goal is that it will help taper the prednisone.

I've been on Actemra for about a year after tapering off Prednisone, which I was on at 60 mg/day for "apparent" Giant Cell Arteritis. In truth: doctors are not sure what I have, but my inflammation levels, as measured by C-reactive protein (CRP) were extremely high, and blood tests showed no signs of other conditions.

Actemra has generated no physically noticeable side effects and has been a HUGE improvement over Prednisone, which had numerous and severe side effects. Actemra did raise my "C4 Complement" scores, which is common when taking it, and my LDL and total cholesterol went up. But I would not have known about these effects except that the blood tests showed them.

Hope this helps.

@lmoross Were you on Prednisone when infected after your Alaska trip, or any other immune suppressing drugs?

I have been on Actemra for about 18 months (now injecting every 2 weeks), and have been avoiding indoor spaces in close proximity to people. So no planes, buses, crowded restaurants, indoor performances, etc. This has been quite limiting, and my rheumatologist says she wouldn't be quite as careful. She says the danger is much less than if I was taking Prednisone. But I'm still concerned that Actemra alone leaves me vulnerable to infection.

Were you on Actemra alone until May 2023, or still also taking Prednisone?